The series tells the story of the rapid evolution of genetic science from Gregor Mendel’s groundbreaking experiment in the 19th century to CRISPR, and the hope that newfound powers to alter DNA with pinpoint precision will transform the treatment of some of the world’s most complex and challenging diseases. The series also tackles the daunting ethical challenges that these technologies pose for humankind.
This looks great, especially if this clip about Nancy Wexler’s crusade to find a cure for Huntington’s disease is representative of the whole:
In 1968, Nancy Wexler’s mother was diagnosed with a rare genetic disease - Huntington’s. Facing a 50-50 chance of contracting Huntington’s herself, Wexler — a non-scientist — began an odyssey to find the gene that causes the disease. For three decades, Wexler searched for treatments but chose not to get tested. As time passed, she noticed changes in the way she moved. Finally, in early 2020, Wexler decided to face her fears.
Part 1 of the series is now streaming on PBS with part 2 set to premiere next week.
Last Friday, I attended the New Yorker TechFest, a one-day, single-track conference about technology, an accompaniment to the larger New Yorker Festival. Overall, I thought the conference was really good, a sentiment echoed by other attendees. What follows is my impressionistic take on the interviews and talks.
Siddhartha Mukherjee. Author of The Emperor of All Maladies, one of my favorite nonfiction books of the past five years. He mentioned therapeutic nihilism, a view of medicine which went out of fashion due to effective medicines and procedures. They talked about the progress in medicine (and accompanying complexity), which is all relatively recent: in 1945, there were three treatments available to patients with heart problems (give them oxygen, drain fluid through the feet, and morphine for the pain) but now there are 90 available treatments. That complexity is an area where AI can help…using machine learning to read chest x-rays more effectively or suggest courses of treatments for a given set of vitals/symptoms.
But Mukherjee warned that “new diagnostic techniques almost always over-diagnose” and that, in relation to CRISPR, extraordinary technologies require extraordinary public response…i.e. we need to have a public conversation about how/why/when these technologies are used. Mukherjee is also involved with biotech startup Vor Biopharma, which is attempting to modify human immune cells to attack cancer cells.
Garry Kasparov & Daniela Rus. Kasparov was one of the world’s best chess players (prob still is tbh) and Rus is the director of the Computer Science and Artificial Intelligence Laboratory at MIT. Kasparov’s face was injured from a taxi accident the day before, an accident that would not have occurred had he been in a self-driving car — he said car accidents due to human error will look ridiculous and barbaric to our children.
(Quick sidebar: I’ve been teaching my 8-year-old daughter a little about cars. She’s been helping me pump gas and after we filled up a low tire the other day, I popped the hood and explained how the engine and cooling system worked. And she said something like, “Daddy, when I’m old enough to drive, cars probably won’t have a motor in them because they’ll all be electric.” From the mouths of babes…)
Kasparov talked about his Deep Blue match, noting that it was the first time in his career that he knew that an opponent was better than he was and that today, free iPhone chess apps are more powerful than Deep Blue was. At one point when talking about tech’s effect on vastly improved medicine and healthcare, he quipped that without technology, old people wouldn’t even be around to complain about new technology. Rus and Kasparov both emphasized the role of AI and robots in society, namely that “robots can do predictable work in predictable situations”, machines will dominate closed systems but open systems are different, and “The machine has a steady hand. It will always prevail.” At times, these pronouncements sounded either comforting or like warnings. Both also noted that education has not kept pace with technology; Kasparov said the current paradigm of kids sitting and listening to a teacher is “antique”.
Alexandra Daisy Ginsberg. Ginsberg is a designer and artist who explores synthetic biology in her work. One of her projects is E. chromi, in which color-producing bacteria could, for instance, turn your poop purple if the water you’re drinking is polluted.
Along with the first two sessions, this conversation really underscored how no one at the conference really talked about technology, which has become something of a meaningless word. Instead, the discussion was about the ethics, politics, and philosophy of technology (whereas at other tech conferences, the talk revolves mostly around business and investment). How does the political conversation keep pace with the increasing speed of technological innovation? Interviewer Michael Spector noted that humans have never developed a technology and then never used it, and that sometimes the tech world’s approach is “I just hope something good happens before something bad happens”.
Jaron Lanier. One of the best sessions. They could have given Lanier a microphone and let him go on for an hour or more. As an 11-year-old, he designed the geodesic dome house that he and his father lived in — “people went through dome phases in my generation” — but it later collapsed, leading Lanier to say that you should definitely let your 11-year-old design your house, but just don’t actually live in it. “When you code, you start thinking of everything as code. You want to optimize and debug people and the world.” He credited Norbert Wiener with the idea of the computer as a potential ultimate Skinner box and said that Facebook is a fantastically effective real-time Skinner box. He chided FB and Google in particular for this, saying that we are not their customers, that we’re the rats in the cage, pushing levers to get treats while they make billions skimming our attention off to advertisers. Silicon Valley is well-meaning, but power corrupts.
Lanier told the story of an apocryphal early-80s Silicon Valley service called Rent-A-Mom, that would take care of all mom-like duties for the archetypal socially inept male programmers of the era and that the startups like Uber, Blue Apron, and Stitch Fix have essentially made the service a reality. Except that “sometimes your mom tells you the truth and we haven’t done that service yet”. Lanier’s newest book, Dawn of the New Everything, is out in November.
The Future of Food. Not very interesting. Felt like paid placement for large food service companies. Although Dan Barber did tell an interesting story about harvesting a carrot at just the right time (after the first frost) so that it converts all the starches to sugar and is super-sweet. Oh, and the sushi at lunch was pretty good.
Jony Ive. In retrospect, Remnick was perhaps not the best choice to interview Ive. I can’t think of who else from the magazine would have been better, so maybe they should have gotten an independent outsider who has followed Apple extensively for the past 20 years — John Gruber for instance.
That said, while Ive said very little about what he’s up to at Apple, he did speak about his process and how he thinks about creativity, particularly about the tension between curiosity (being open, creative, child’s mind, anything goes) and focus (the need to make this one thing work and ignore everything else). Ive called Steve Jobs the most focused person he’d ever met.
Carrie Goldberg & Brianna Wu. Another excellent session. Listening to these two women talk about their desire to publicly stand up against some of the most reprehensible and dangerous behavior imaginable was inspiring. Goldberg was almost levitating on stage because one of her clients’ stalkers has just been arrested for online harassment, a rare event that Goldberg is working on making more common. Goldberg talked about her taxonomy of offenders in cases like these: assholes (jilted ex, revenge porn), perverts (who do it for sexual gratification), trolls (they love feeding the flames), and psychos (are actually mentally disturbed).
Wu said while Twitter bears most of the brunt of the online harassment backlash, Facebook is “much much much more of a problem” and they care much less about fixing it than Twitter does. She also called the failure to prosecute Gamergate one of the biggest mistakes of the Obama administration and that there are more consequences for bad acts in Grand Theft Auto than there are IRL for women who get threatened online.
Gina McCarthy. Excellent. McCarthy was the head of the EPA under Obama. A very impressive person…I had forgotten what an extremely competent public servant sounded like. I don’t have much beyond that…I didn’t take notes because I was too enthralled as she deftly explained how politics intersected with the law. McCarthy for President? Sign me up.
Michael Lynton. Chairman of Snap. This did not make me any more interested in signing up for Snapchat. Or confident that Snap can remedy their poor start as a publicly traded company.
Gabriella Coleman & Thomas Rid. I didn’t take too many notes for this talk either…was too busy paying attention. I do remember Coleman saying that a big reason why Wikileaks took off was that they made it easy for both journalists and normal people to easy search through the leaked documents. The inherent importance of the documents is significant, but making it accessible increases their relevance.
Bill Maris & Thomas Rando. Maris discussed the concept of longevity escape velocity, the theoretical point at which human life expectancy increases faster than passing time, resulting in a scenario where you can live forever (assuming you don’t get hit by a bus…which would be less likely if all future buses are self-driving).
Van Jones. CNN commentator and author of Beyond the Messy Truth (out today). I don’t watch cable news so I didn’t know much about Jones, but I came away impressed. His comparison of poor rural whites who get dinged for voting against their own economic self-interest and wealthy coastal liberal who are lauded for voting against their own economic self-interest was particularly apt. Jones talked about the central tension of the US, trying to reconcile the founding reality of America vs the founding dream of America. He also called Bernie Sanders “a 143-year-old political Muppet”. Oh, and they should have paired Jones with someone other than Adam Davidson…or just let him do a 30-minute talk (which he pretty much did anyway…the man knows how to commentate).
Keller Rinaudo. Rinaudo is the CEO and co-founder of a company called Zipline. Zipline engineers national-scale medical delivery systems via drone. When he first started to explain how it works, I was like, oh that’s a cool concept, I wonder how far off something like that is. And then it became apparent that Zipline actually works, now. WAT? In Rwanda, Zipline has cut blood delivery times to remote areas from several hours to 15-30 minutes.
Really impressive. And a good note to end on: technology that truly does make the world better.
In the wake of his diagnosis, many of those expressing support for McCain reference his considerable personal strength in his fight against cancer. President Obama said:
John McCain is an American hero & one of the bravest fighters I’ve ever known. Cancer doesn’t know what it’s up against. Give it hell, John.
John and I have been friends for 40 years. He’s gotten through so much difficulty with so much grace. He is strong — and he will beat this.
This is the right thing to say to those going through something like this, and hearing this encouragement and having the will & energy to meet this challenge will undoubtably increase McCain’s chances of survival. But what Biden said next is perhaps more relevant:
Incredible progress in cancer research and treatment in just the last year offers new promise and new hope. You can win this fight, John.
As with polio, smallpox, measles, and countless other diseases before it, beating cancer is not something an individual can do. Being afflicted with cancer is the individual’s burden to bear but society’s responsibility to cure. In his excellent biography of cancer from 2011, The Emperor of All Maladies, Siddhartha Mukherjee talks about the progress we’ve made on cancer:
Incremental advances can add up to transformative changes. In 2005, an avalanche of papers cascading through the scientific literature converged on a remarkably consistent message — the national physiognomy of cancer had subtly but fundamentally changed. The mortality for nearly every major form of cancer — lung, breast, colon, and prostate — had continuously dropped for fifteen straight years. There had been no single, drastic turn but rather a steady and powerful attrition: mortality had declined by about 1 percent every year. The rate might sound modest, but its cumulative effect was remarkable: between 1990 and 2005, the cancer-specific death rate had dropped nearly 15 percent, a decline unprecedented in the history of the disease. The empire of cancer was still indubitably vast — more than half a million American men and women died of cancer in 2005 — but it was losing power, fraying at its borders.
What precipitated this steady decline? There was no single answer but rather a multitude. For lung cancer, the driver of decline was primarily prevention — a slow attrition in smoking sparked off by the Doll-Hill and Wynder-Graham studies, fueled by the surgeon general’s report, and brought to its full boil by a combination of political activism (the FTC action on warning labels), inventive litigation (the Banzhaf and Cipollone cases), medical advocacy, and countermarketing (the antitobacco advertisements). For colon and cervical cancer, the declines were almost certainly due to the successes of secondary prevention — cancer screening. Colon cancers were detected at earlier and earlier stages in their evolution, often in the premalignant state, and treated with relatively minor surgeries. Cervical cancer screening using Papanicolaou’s smearing technique was being offered at primary-care centers throughout the nation, and as with colon cancer, premalignant lesions were excised using relatively minor surgeries. For leukemia, lymphoma, and testicular cancer, in contrast, the declining numbers reflected the successes of chemotherapeutic treatment. In childhood ALL, cure rates of 80 percent were routinely being achieved. Hodgkin’s disease was similarly curable, and so, too, were some large-cell aggressive lymphomas. Indeed, for Hodgkin’s disease, testicular cancer, and childhood leukemias, the burning question was not how much chemotherapy was curative, but how little: trials were addressing whether milder and less toxic doses of drugs, scaled back from the original protocols, could achieve equivalent cure rates.
Perhaps most symbolically, the decline in breast cancer mortality epitomized the cumulative and collaborative nature of these victories — and the importance of attacking cancer using multiple independent prongs. Between 1990 and 2005, breast cancer mortality had dwindled an unprecedented 24 percent. Three interventions had potentially driven down the breast cancer death rate-mammography (screening to catch early breast cancer and thereby prevent invasive breast cancer), surgery, and adjuvant chemotherapy (chemotherapy after surgery to remove remnant cancer cells).
Understanding how to defeat cancer is an instance where America’s fierce insistence on individualism does us a disservice. Individuals with freedom to pursue their own goals are capable of a great deal, but some problems require massive collective coordination and effort. Beating cancer is a team sport; it can only be defeated by a diverse collection of people and institutions working hard toward the same goal. It will take government-funded research, privately funded research, a strong educational system, philanthropy, and government agencies from around the world working together. This effort also requires a system of healthcare that’s available to everybody, not just to those who can afford it. Although cancer is not a contagious disease like measles or smallpox, the diagnosis and treatment of each and every case brings us closer to understanding how to defeat it. We make this effort together, we spend this time, energy, and money, so that 10, 20, or 30 years from now, our children and grandchildren won’t have to suffer like our friends and family do now.
Siddhartha Mukherjee has a written a biography of the gene as deft, brilliant, and illuminating as his extraordinarily successful biography of cancer. Weaving science, social history, and personal narrative to tell us the story of one of the most important conceptual breakthroughs of modern times, Mukherjee animates the quest to understand human heredity and its surprising influence on our lives, personalities, identities, fates, and choices.
This book filled in a number of gaps in my knowledge, plus it is engaging to read. Overall it confirmed my impression of major advances in the science, but not matched by many medical products for general use.
This is on the must-read list this summer. Somehow. When I get a second.
Oh, this sounds fantastic: PBS is set to air a six-hour documentary series, Cancer: The Emperor of All Maladies, starting at the end of March. How have I not heard about this before today?
This “biography” of cancer covers its first documented appearances thousands of years ago through the epic battles in the 20th century to cure, control and conquer it, to a radical new understanding of its essence. The series also features the current status of cancer knowledge and treatment — the dawn of an era in which cancer may become a chronic or curable illness rather than its historic death sentence in some forms.
The series is based on Siddhartha Mukherjee’s The Emperor of All Maladies: A Biography of Cancer, which is one of the most interesting books I’ve read in the past few years. Ken Burns is executive producing and Barak Goodman is directing.
Thanks to Sarah Klein at Redglass Pictures for letting me know about this. Redglass created a pair of videos for the series featuring Terrence Howard and Ken Jeong talking about their experiences with cancer.
The streetlights in Buenos Aires are considerably dimmer than they are in New York, one of the many things I learned during my family’s six-month stay in Argentina. The front windshield of the rental car, aged and covered in the city’s grime, further obscured what little light came through. When we stopped at the first red light after leaving the hospital, I broke two of my most important marital promises. I started acting like my wife’s doctor, and I lied to her.
I had just taken the PET scan, the diagnostic X-ray test, out of its manila envelope. Raising the films up even to the low light overhead was enough for me to see what was happening inside her body. But when we drove on, I said, “I can’t tell; I can’t get my orientation. We have to wait to hear from your oncologist back home.” I’m a lung doctor, not an expert in these films, I feigned. But I had seen in an instant that the cancer had spread.
The last sentence here really got to me:
Our life together was gone, and carrying on without her was exactly that, without her. I was reminded of our friend Liz’s insight after she lost her husband to melanoma. She told me she had plenty of people to do things with, but nobody to do nothing with.
Bach’s discussion of treatment options reminded me of Siddhartha Mukherjee’s The Emperor of All Maladies, which is one of my favorite books of recent years. I was also reminded of how doctors die.
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